Welcome to our News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!
We will be resuming in-person lectures this year as well as continuing our virtual Ask the Expert series. Keep an eye out for January’s upcoming lectures and check out past educational lectures on our website here.
Have a topic of interest? Contact: email@example.com
Introducing a support meeting for children ages 6-9 with Chiari, syringomyelia and related disorders! We all know the benefits of connecting with someone who knows just what you’re going through, let’s show our kids that they aren’t alone in this fight. Parents, accompany your child or children to the 6:30pm meeting and then stay on with us for our usual 7:00pm parent meeting!
1/11 @6:30pm – Children Support Meeting
1/11 @7:00pm – Parent Support Meeting
1/25 @7:00pm – Adult Support Meeting
1/30 @5:00pm – High School/College Support Meeting
A very brief, new survey will be available in the online patient registry by mid-January. Make sure you’ve signed up ahead of time and you will receive a reminder notification. More about this survey:
The so-called “5mm rule” in Chiari malformation treatment has come into question because it does not accurately predict symptom severity or treatment success. In it, a patient is considered to have a Chiari malformation if their cerebellar tonsils are located at 5mm or greater below the foramen magnum, or the opening at the top of the spinal canal. The goal of this survey is to determine whether or not this rule has greatly impacted the likelihood of accessing neurosurgical Chiari care over the years. This survey will take less than five minutes to complete!
Chiari Surgical Success Scale
Enrollment is beginning on the CSSS. We are very excited to see this project through. In the next few months, we plan to offer a video crash course on the study and answer any questions you might have about the study.
2022 Valentine’s Casino Night – February 12, 2022
Sponsorship opportunities, Tickets and other details HERE.
Donate an item for auction or raffle.
2022 Bobby Jones Classic at East Lake – March 27-28, 2022
Register, Sponsor and secure your hotel room HERE
“Oktoberfest” Dinner Dance for a Cure
SAVE THE DATE October 22 – Tickets and sponsorships available soon!
We are so excited to officially open up the 2022 unite@night walk Chairperson registration. EXTENDED: Anyone who registers before February 1st will receive a special item from us! (You will receive your item once we have your walk date and site confirmed and set up.)
Sign up to become a 2022 unite@night Walk Chair here.
Are you interested in becoming a 2022 national unite@night walk sponsor? View the sponsorship levels here. If you would like to register to be a walk sponsor online, visit here. Or you may mail in this form along with your check.
Please note, we must know by April 1st if you will be sponsoring in order to include national sponsors on the t-shirt.
We will be walking to the Hill again this year. SAVE THE DATE!
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